The Crisis in AIDS Care
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If you have issues viewing or accessing this file contact us at NCJRS.gov. The Crisis in AIDS Care A Call To Action 127701 u.s. Department of Justice Nationallnstltute of Justice . document has been reproduced exactly as recei~e? from the ;~~~on or organization originating it. Points of view or opinions stat~d in this document are those of the authors and do. not nec~ssan y represent the official position or policies of the National Institute of Justice. Permission to reproduce this copyrighted material in mi crofiche only has been granted by Citizens Commission on AIDS for New York City & Northern New Jersey to the National Criminal Justice Reference Service (NCJRS). Further reproduction outside of the NCJRS system requires permis sion of the copyright owner. CITIZENS COMMISSION ON AIDS for New York City and Northern New Jersey 121 Avenue of the Americas, 6th Floor New York, NY 10013 (212) 925-5290; FAX: (212) 925-5675 first printing, March 1989 second printing, May 1990 . " Citizens Commission on AIDS for New York aty and Northern New Jersey Work Group on Care and Service Commissioners: Needs Co-Cbairs: . Co-Cbairs: John E. Jacob . Peter Arno President & CEO Montefiore Medical Center National Urban League Albert Einstein College of Medicine John E. Zuccotti Jesse Green Partner, Brown & Wood New York University Medical Center Members: Members: Sandra Feldman Ernest Drucker President, United Federation of Teachers Montefiore Medical Center Carole A. Graves John Griggs President, Newark Teacher's Union United Hospital Fund Bernard Jacobs John Jacobi President, The Shubert Organization, Inc. Office of the Public Advocate State of New Jersey judith Jamison ; The Jamison Project Margaret Nichols CBO consultant J. Richard Munro New Jt\rsey President & CEO, Time Inc. Gerald Oppenheimer Bernard Rabinowitz Brooklyn College Publisher, NJ Magazine David E. Rogers, M.D. Walsh-McDermott Univ. Prof. of Med. Staff: NY Hospital-Cornell Medical Cntr Carol Levine Frederick A. O. Schwarz, Jr. Executive Director Partner, Cravath, Swaine & Moore Nelson Fernandez T. Joseph Semrod Program Assistant President & CEO, United Jersey Banks Michael Rosen Gloria Steinem Administrative Coordinator Founder & Consulting Editor Ms. Magazine Thomas Stoddard Executive Director Lambda Legal Defense & Education Fund, Inc. Father Victor Yanitelli, S.J. Vicar, St. Ignatius Loyola Parish Contents Introduction 1 Chapter 1 AIDS and the Future of Hospital Care 3 Interview: "Robert" 15 Chapter 2 Long-term Care: A Long-term Commitment 17 Interview: "Noni" 31 Chapter 3 An Expanded Role for Community-Based 33 Organizations Interview: "Jeff' 47 Chapter 4 Housing, Homelessness, and the Impact of 49 HIV Disease Interview: "Paco" 61 Chapter 5 The SpeCial Needs of Women, Children, 63 and Adolescents Interview: "James" 75 Chapter 6 Preventing Discrimination in the Care of 77 AIDS/HN Patients Chapter 7 Planning for Early Intervention in 87 HN Disease Acknowledgments 97 Foundation Support 99 Introduction The Citizens Commission on AIDS for New York City and Northern New Jersey began its work more than a year and a half ago with a mission of stimulating private sector leadership in response to AIDS. The care and service needs of people with AIDS and HIV infection was identified by the Commission as an urgent item on its agenda. Like other groups that have examined this issue, the Commission found that AIDS is a beacon that focuses attention on gaps in health and social services. What began as an examination of the problems of people with AIDS and HIV infection has thus turned into an increasing awareness that health care for all is endangered. As a result, the Commission's recommendations have been drafted with the goal of improving health care and social services for all citizens. A growing sense of urgency has framed our work. Words like "crisis," "emergency," and "catastrophe" came to be commonplace in our discussions. That sense of urgency is, we hope, conveyed in our Action Plans for New York City and New Jersey. This background report was prepared for the Commission by its Work Group on Care and Service Needs, co-chaired by Peter Arno, assistant professor of health economics at Montefiore Medical Center/Albert Einstein College of Medicine; and Jesse Green, director of health policy research at New York University Medical Center. The Commission staff also contributed to the report. It opens with sections o~ hospitals and long-term care facilities. Then it explores the complex questions surrounding community-based organizations; housing and homelessness; women, children, and adolescents; discrimination in the care of AIDS/HIV patients; and the impact of early diagnosis and intervention. In the course of its study, the Commission met with persons with AIDS and heard moving testimony about their difficulties in obtaining care. Five interviews ar~ included here to bring to life the kinds of problems people with AIDS face as they seek health care and supportive services. Having produced this report, the Commission now moves to its next stage: advocacy. There can be no satisfaction in adding yet another report to the growing body of documentation of the health care crisis unless it leads to greater public awareness and action. An informed and aroused citizenry must mobilize to meet the emergency. John E. Jacob John E. Zuccotti March 1989 Chapter 1 AIDS and the Future of Hospital Care AIDS appeared on the health care horizon ten years ago, suddenly and without warning. Although the entirely new and phenomenally complex disease did not even have a name, hospitals immediately became involved in its diagnosis and treatment, as well as in research. A whole new field of therapeutics had to be invented to deal with its myriad manifestations. Whole hospital wards became AIDS units. AIDS teams were formed. Physicians learned about a new disease from scratch. Thousands of nurses, residents, social workers, technicians, dieticians, and orderlies dealt with personal fears and -- in the vast majority of cases -- overcame them and kept on working. Ten years later, New York City's hospitals are still at the forefront of the provision and development of AIDS treatment. They too have responded, by and large, by doing their job -- providing care and treatment to those with AIDS. As Bruce Vladeck, president of the United Hospital Fund, has said, "We need to begin by taking note of the extraordinary response of this city's hospital community ... to the extraordinary challenges with which the epidemic has confronted it."l The i~pact of AIDS on New York City hospitals is far out of proportion to its impact on any other city. Presently, the AIDS census in New York City's hospitals grows by more than one bed eveD' day. There are more AIDS patients hospitalized every day at Bellevue Hospital in New York City than in the entire city of San Francisco. New Yark City hospitals admit more than four times as many AIDS patients and devote more than eight times as many beds to AIDS treatment as San Francisco hospitals. And while San Francisco's one public hospital has an AIDS caseload composed almost entirely (97 percent) of gay men, New York City's 11 public hospitals have an AIDS caseload that is more than two-thirds IV drug users -- individuals with a host of special problems including homelessness, histories of poor health and poor nutrition, responsibilities for young children without other caretakers, lack of insurance, poor access to primary care physicians, and detoxification needs. As a result of AIDs and other health care crises, New York City's hospitals are stretched to the breaking point. Occupancy levels are dangerously high; emergency rooms are backed up; staffing shortages are critical; revenues are not covering costs. New York may be the only American city with fewer hospital beds than it needs and this gap is likely to widen significantly. The result will be a serious loss of access to hospital care for all New Yorkers and a constant state of crisis in these facilities. Despite the danger, there is no sign that major efforts are underway to find systemwide solutions. 3 4 New York Oty's Hospitals at the Breaking Point New York City's hospitals are operating at occupancy levels higher than at any time in recent history and higher th,an in any other city in the country. The average hospital occupancy rate in the United States is 60 percent. In many parts of the country, hospitals aggressively attract patients through marketing efforts. In New York City, by contrast, most hospitals have occupancy rates above 90 percent and many exceed 100 percent. Like any service delivery system, hospitals require a buffer between average occupancy level and maximum capacity in order to deal with peak times and with crises. There are large daily fluctuations in hospital census totals due primarily to the ebb and flow of unscheduled admissions. If the average day brings a hospital to 90-100 percent of capacity, what happens on a busy day? On a very busy day? What happens during a catastrophe, such as an explosion, a plane crash, a riot, or a terrorist incident? How can the system-cope with the outbreak of another epidemic illness, such as Legionnaire's disease, a virulent strain of flu, or something else that we can't even predict? In a report entitled "New York City'S Hospital Occupancy Crisis: Caring For a Changing Patient Population," the Bigel Institute and the United Hospital Fund describe the factors that created the current crisis. During the early 19808, hospital utilization in New York City declined, reaching a ten-year low in 1986. A similar trend occurred throughout the United States. Forecasters and planners expected the trend to continue, but instead it reversed dramatically, with hospital occupancy levels soaring from 82 percent to above 90 percent.